Shown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by JusALIlbit on February 27, 2011, at 17:42:35
Hi, Here's my story:
- Moody in varying degrees my whole life (with bouts of depression and episodes of rage with many suicidal gestures and thoughts)
- some sexual and emotional abuse as an adolescent girl
- developed bulimia at age 13
- post-partum depression
- in unhappy marriage for 15 years
- depression and mood disorder getting much worse (cycling hard to determine, very irregular and even hourly/daily).
- never treated as a child or adult
- finally sought treatment about a year ago
- one pdoc prescribes Lamictal, Cymbalta and Abilify
- another Neurologist and pdoc prescribe Neurontin for (a) strange taste sensations, neuropathic pain and numbness (b)pdoc for mood, so chose this because it addresses physical symptoms(taste, numbness)) as well as mood. Afraid of other combo and pdoc refuses to discuss, says just take it or not
- been on Neurontin since Dec. 2010, dose worked up to 1500 mg (500mg 3x)
- notice regular cycling and does not help for taste or numbness. This pdoc will not return my calls and cannot see for a month.
- experiencing extreme lack of concentration, memory problems and cycle from hypomanic to very sad in 24 hours, then works back again over course of a week.
- I cannot get adequate help after trying for a year!pdocs not willing to listen or review my mood chart, just 15 visit and prescribe drugs, then no follow-up for weeks or months. Won't return calls. Very frustrated!!!
What do I do now???
Posted by Phillipa on February 27, 2011, at 18:49:55
In reply to New-No Progress in a Year- HELP!, posted by JusALIlbit on February 27, 2011, at 17:42:35
Find another pdoc asap. Not easy to do. Might try a University Hospital, call a crisis line. Phillipa
Posted by JusALIlbit on February 27, 2011, at 19:35:08
In reply to Re: New-No Progress in a Year- HELP! » JusALIlbit, posted by Phillipa on February 27, 2011, at 18:49:55
I did originally and they said I could go to ER but they would release me and send me to MH clinic. So I went to the clinic last May and pdoc wouldn't discuss meds and help me understand, he is too busy. I'm afraid and need a little reassurance about psychtropic drugs. I am the sole financial support for my family and jobs are hard to find and keep. I have done the right things, but it's impossible to find a good pdoc. I'm still sick and tonight very despondant and sad about it all. I wanna get better, but the MH system sucks!Wait weeks, get meds, poor follow-up. repeat.
Posted by Phillipa on February 27, 2011, at 21:12:18
In reply to Re: New-No Progress in a Year- HELP!, posted by JusALIlbit on February 27, 2011, at 19:35:08
Reassurance in that they will work for you? They say some respond to a med others take a lot longer to find a combo that works. I agree the MH system stinks. Phillipa
Posted by JusALIlbit on February 27, 2011, at 21:35:58
In reply to Re: New-No Progress in a Year- HELP! » JusALIlbit, posted by Phillipa on February 27, 2011, at 21:12:18
I don't want a guarantee a medication or medications will work, but rather a doctor who is willing to explain the pros and cons and expected results and reassure me that they have selected the best meds and will be there to help me and answer questions as they arise, in this very difficult time. these psychtropic drugs are not like prescribing an anti-biotic or cough medicine. This is serious and scary stuff. Living like this in no fun.
Posted by Phillipa on February 27, 2011, at 23:22:06
In reply to Re: New-No Progress in a Year- HELP!, posted by JusALIlbit on February 27, 2011, at 21:35:58
And that is a right you should have. Yes very scarey stuff. Hoping some other chime in to offer advise. Phillipa
Posted by bleauberry on March 3, 2011, at 4:49:18
In reply to New-No Progress in a Year- HELP!, posted by JusALIlbit on February 27, 2011, at 17:42:35
It is enough of a challenge to get better with a good doctor. But nearly impossible with one who is not. Your don't sound good to me. I don't know any more than what you said, but if your docs were mine I would be firing them and hunting around.
The most important qualities of a doctor:
-Excellent listener
-Cooperative
-AccessibleAnd of course, some experience and skill helps! I have a sour taste in my mouth, because after 12 psychiatrists and several other MDs, NONE seemed to have the experience or skills to deal with anything other than plainjane garden variety minor depression. They all missed the obvious clues.
In your case there are obvious clues being completely ignored.
Here is just one, for example. Numbness? That's a huge clue! Long story, but that calls for antibiotics, or at the very least a major suspicion of an unseen and likely undiagnosble infection. Lyme qualifies, among others. Your doc will disagree, which is why patients stay sick and waiting rooms stay full.
With weird neurological symptoms, such as yours and mine, the diagnosis often does not come until AFTER treatment. In other words, you have to be suspicious, treat the suspicion, and depending on the results make the diagnosis. That is for example the only accurate way to diagnose Lyme disease....take antibiotics first, see what happens, and see prior negative lab results turn positive.
Hard to find a doctor though that has the ears, the creative mind, and the experience to put 2 + 2 together. But they do exist. Ask around. Call some and ask questions. Screen them. It's ok to do that. After all, you are the paying customer. They work for you, not the other way around. You are the boss.
Posted by JusALIlbit on March 3, 2011, at 10:54:06
In reply to Re: New-No Progress in a Year- HELP!, posted by bleauberry on March 3, 2011, at 4:49:18
Hi I have been tested for the following:
- Auto-immune tests- all conditions -NEGATIVE
- Neurologist, suspected MS (brain scan NEGATIVE) and did test of large, med and small nerve fibers, all OK (some suspicion of small fibers, but not drastic)
- GI tests, result in slight GERD, but I have tremendous acid reflux which I think causes or exacerbates acid/metallic taste
- Neurologist thought taste may be due to a condition called Burning Mouth Syndrome which can result from hormones (mine have been tested) and chronic anxiety and depression and or epileptic type condition, therefore Neurontin was prescribed (and does not help)
- Bowel motility problems, some from ED but new doc says mostly my anatomy and am being given meds that I am not sure yet about effectiveness
- Numbness is mostly right sided arms and legs, face (lips, tongue, jaw) and both hands
- Mood cycling has increased while on Neurontin, so I believe I need to wean off it and start lamictalRegarding Lyme disease, what specific tests are required? I have been on large doses of antibiotics over the past 2 years due to bowel obstructions and a cat bite.
I am mostly concerned about the mood condition and getting this under control, as it seems to be getting worse. Main complaints are drastic high to low within 48 hours and complete lack of focus and concentration. It makes it impossible to get work done.
The problem with finding a good pdoc is locating one, seeing if the are accepting patients, then if they accept your insurance and then do they know your condition, are an excellent listener and cooperative
I am tempted to go to a major center like John Hopkins for a consultation.
What other major hospitals are known experts for mood disorders, bipolar and BPD?Thanks for the feedback.
Posted by Cydnie on March 14, 2011, at 9:27:11
In reply to Re: New-No Progress in a Year- HELP!, posted by JusALIlbit on March 3, 2011, at 10:54:06
I haven't had any progress in a year either and was abandoned by my pdoc of years, so you're not alone. I feel so depressed, and have been going through pain and other things. So after going to a million doctors, my rheumatologist sent me to a specialist rheumatologist, and they are allergist/immunological rheumatologists. She really looked at everything, older labs, and did tons of new ones before finally telling me after years of looking, what it was (mast cells). I've heard of burning mouth syndrome, I think these doctors can even tell you about this as well, and they do labs for lyme's. This was in Boston, so I don't know where you are. I also am not far from McLean hospital, you asked about hospitals that deal with mood disorders. Someone I know works there (I used to too, back when I was much more functional, and was a mental health counselor!!! seems like so long ago!!) Anyway, I had a horrible time finding a good pdoc and just began asking everyone I knew (if you are in Boston, or near, you can PM me, and I can recommend someone great). If you're not, what I did was come on here and ask, ask family about theirs, ask my pcp, and called different docs. If they seemed remotely mean (bad trigger for me), then I don't ever call back. I also called my insurance company and got a list of docs who were accepting new pts and took my insurance and cold called, but also asked my doc and even can ask pharmacist if anyone knew them. I hope some of those suggestions work. Good luck!
Posted by JusALIlbit on March 15, 2011, at 0:05:10
In reply to Re: New-No Progress in a Year- HELP!, posted by Cydnie on March 14, 2011, at 9:27:11
> I haven't had any progress in a year either and was abandoned by my pdoc of years, so you're not alone. I feel so depressed, and have been going through pain and other things. So after going to a million doctors, my rheumatologist sent me to a specialist rheumatologist, and they are allergist/immunological rheumatologists. She really looked at everything, older labs, and did tons of new ones before finally telling me after years of looking, what it was (mast cells). I've heard of burning mouth syndrome, I think these doctors can even tell you about this as well, and they do labs for lyme's. This was in Boston, so I don't know where you are. I also am not far from McLean hospital, you asked about hospitals that deal with mood disorders. Someone I know works there (I used to too, back when I was much more functional, and was a mental health counselor!!! seems like so long ago!!) Anyway, I had a horrible time finding a good pdoc and just began asking everyone I knew (if you are in Boston, or near, you can PM me, and I can recommend someone great). If you're not, what I did was come on here and ask, ask family about theirs, ask my pcp, and called different docs. If they seemed remotely mean (bad trigger for me), then I don't ever call back. I also called my insurance company and got a list of docs who were accepting new pts and took my insurance and cold called, but also asked my doc and even can ask pharmacist if anyone knew them. I hope some of those suggestions work. Good luck!
Hi cindy. I ahve also seen an immunologist/rheumatologist and she did the test for mast cells which was negative. Also saw a neurologist and tested for MS etc. and neagtive also. Saw my pdoc today and she still isn't taking me serious and I wasn't in the mood to fight. I am withdrawing from Neurontin and having a lot of stomach/gi cramps and aches. I am a few hours from Boston, so may contact you for your doctors info or you can pm me. Also, I like your suggestions for finding a new pdoc. Thanks and good luck also. Keep in touch.
Posted by Phillipa on March 15, 2011, at 19:35:14
In reply to Re: New-No Progress in a Year- HELP!, posted by JusALIlbit on March 15, 2011, at 0:05:10
I still have the antibodies after two years of tx with biaxin xl for long term lymes disease found on a test. 6 bands still present for lymes. Tried some doxy again nothing so not taking antibiotics as they also have a set of problems. The infection control specialist thinks the biaxin xl is why I lost my taste and smell I think the lymes destroyed the neurons. Phillipa
This is the end of the thread.
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